Saturday, July 14, 2007

Is It A Sign?...

Let's just say my Novantrone infusion did NOT go well yesterday and I am worried this might be a "sign" of things to come...or maybe I'm just *hacked* off with the whole process and also with Dr. She Who Will Not Be Named?!? Today, I am left nauseated, pissed off, and fatigued - none of which I consider a "good sign".

As you may recall, I have been seeing Dr. SWWNBN six weeks following my Novantrone infusions...my June appointment was my six week marker for scheduling yesterday's Novantrone infusion. I also get the orders for a repeat Echocardiogram, basic blood chemistry panel, and complete blood count at my six-week-post-infusion appointment...I schedule THESE tests approximately 2 weeks before the next Novantrone infusion.

Because the IV leaves me feeling puny and sick for 4-5 days post infusion, it is ALWAYS a difficult decision how I will take these days off from work and STILL remain gainfully employed. My July vacation seemed the most reasonable way to "fit" this event in and NOT have to take more time off from work...what a vacation, right!?!

So...I managed to get all of the testing done with enough time for Dr. SWWNBN to review the results before July 13th - yesterday's scheduled dose. At my June appointment, she had also made me aware she would be going on vacation the second week of July until God knows when...at the exact time of my next infusion.

For those of you who have painfully followed BRAINCHEESE over the past year and a half, you may recall LAST summer when I ended up in the ER following steroid infusions? This was ALSO while Dr. SWWNBN was out of the COUNTRY on vacation! Her vacations do not seem to mix well with my treatment needs. LOL

You can imagine I was already a bit pensive going in for my Novantrone yesterday with Dr. SWWNBN out of town spending my bottomless insurance payments at her leisure. But I HAD asked her who would be covering for her while she was gone...in the event a not-so-typical-but-typical-for-me situation occurred. Yes, THIS time one of her associates would be taking call...Whew...No scrambling to find someone besides the hospital janitor to write orders for me if needed. Surely my infusion would go OK in the good doctor's absence?

Well...I WAS *MISSION ACCOMPLISHED IN IRAQ* WRONG!!! Murphy's Law requires at least ONE major *eff-up* for all of my medical needs...and so the story goes in my own words and opinion:

I was picked up by my dear friend and confidant, "Cocoa" (ahh...that's her stage name/her first pet's name. Yes, she IS undercover NSA, so drop it!), and whisked up the hill to Club Med for my 2:00PM infusion appointment. I was on time. I am ALWAYS on time for medical appointments...unlike the general population of medical providers. I settled into one of the crappier infusion rooms that didn't have it's own bathroom...I should have KNOWN this was already a signal for disaster. I am usually placed in one of the *posh* rooms - equipped with a door, a bathroom, and a nice recliner. My current temporary surroundings had a paper-thin curtain, no bathroom, was the size of a closet, and had an uncomfortable and broken reclining chair...hummmmm...

The infusion unit was extremely noisy...patients were yakking on cell phones, over head pages were blaring in the loud speakers, and I drew one of the *gabby-er* of the three nurses who work in the unit (mind you...I know these nurses well, having received over 20 infusions of steroids and Novatrone in the past year!)...THIS, too, should have been a sign.

Nurse Gabby enters my closet (since there's no door, she really could have just yelled at me from the desk...like everyone else was doing on there cell phones) to let me know the pharmacy called her two hours ago and noted Dr. SWWNBN had DOUBLED my Novantrone dose...what the Faaa???

**SEGWAY** I had called Nurse Gabby around 10:00AM like I am SUPPOSED to do before every infusion to let her know my current weight. She then calls the pharmacy, who calculates my Novantrone dose based on a "mass squared" principle...it really IS rocket science! Based on my height and weight, the chemotherapy agent is mixed just for me a few hours before I receive it to insure it remains properly constituted. The pharmacy had called her WELL before I arrived at 2:00PM to advise contacting my doctor because of her quack order. Nurse Gabby tried to reach said doctor around 12:30PM, but couldn't raise anyone in her office...SOOOOO...she just told the pharmacist to go ahead and mix the QUACK dose!! **END SEGWAY**

I should have just walked out, but noooooo. I had to stay throughout this entire, frustrating process to try to figure out the RIGHT dosage AND get my infusion!!! My vacation was depending on it, after all...*snark, snark*

I suppose I should qualify a large part of my frustration here...nurses. Yes, I am also a nurse, but I have absolutely NO PATIENCE for nursing incompetence. Frankly, this may be WHY I have no patience for incompetent nurses...because I AM ONE (a nurse, that is...hopefully competent) and therefore, know HOW nurses are supposed to do their jobs. I had to basically take Nurse Gabby by the hand and walk her through what needed to happen/how it should happen/what she needed to do to GET MY EFFING MEDICATION ORDER CORRECTED!!!

Let me try to wrap this up here...1. I refused to take a double dose of the Novantrone, 2. I insisted Nurse Gabby call the doctor on call for Dr. SWWNBN to clarify the order (who turned out to be a useless waste of plasma!), 3. I demanded Dr. Useless review my blood work and Echocardiogram before I would accept the infusion (because I asked Nurse Gabby to make sure SOMEONE had done this since Dr. SWWNBN's office had informed her NONE OF THESE TESTS WERE ON MY CHART!!!!!!!!!!!!!), 4. When Dr. Useless could not be tracked down to review my tests, I made Nurse Gabby call the lab to fax my blood work to the infusion unit and call the Cardiology Department to review my ECHO, 5. And finally...I reviewed my own lab results and radiology report of my ECHO (after consultation with the cardiology department via phone) and consented to a 12mg/m2 dose of Novantrone. THE DOSE I SHOULD BE RECEIVING.

I am too tired, nauseated, and irritable today to formulate any lasting ideas or plans about how I should handle this situation from today forward...but believe me...a very formal email was fired off to Dr. SWWNBN when I finally got home last night. I left my previous neurologist because of the INCOMPETENT hospital system she worked in...I am hoping I will not be feeling the door handle hitting me on the way out of THIS system as well! But Dr. SWWNBN has some serious *s'plainin'* to do this time...oh, and an apology would be nice, too...*I'm NOT* LOL here...

7 comments:

Most people would have gladly accepted the wrong dose with a smile without a clue to their demise! It is lucky for you that you have the professional ability to coordinate and manage your own case FOR the medical professionals. Sorry everyone is on vacation mode as they are ruining yours.

Survivor MS

HAWAII 2014 PARASAIL

EMAIL:

LOCATION:

Seattle, WA, USA

AGE & OTHER TRIVIA:

53/female/Leo

DIAGNOSIS:

Relapsing & Remitting Multiple Sclerosis--Diagnosed 04/15/2003--(because having to pay taxes that day just wasn't enough!)

MEDICATIONS:

I have taken Copaxone, Avonex, IVIg, Tysabri, and 5 doses of Novantrone in 2007. I also participated in a Rituxan Study in 2005-2006. In the fall of 2007, while still on Novantrone, I began having "break through" symptoms, which became more and more frequent. In March 2008, I had an MRI that showed many enhancing lesions--Novantrone was no longer effective. Tysabri had been discontinued in November 2006, due to a questionable "anaphylactoid reaction". I received my first restart dose of Tysabri on April 8th, 2008, without experiencing ANY allergic response...I completed 9 doses of Tysabri in 2008, but continued to have some relapsing symptoms. I have, since December 2008, stopped all Disease Modifying medications and feel great...but don't tell my neurologist!